mom and son with dwarfism

Realizing the Spectrum of My Son's Rare Form of Dwarfism

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Are all children alike? Any mother of multiples will tell you, no. Each child has his/her unique personalities and qualities. Some children are quiet and reflective, others are outgoing and bubbly. No one questions this truth.

When my son was diagnosed with a rare form of dwarfism called thanatophoric dwarfism (TD), I assumed all children with TD had the same characteristics. Cute button nose, sho mom and son with dwarfism

rt arms with adorable kissable web-like hands, sweet tiny toes and a small chest are a few visible characteristics of his diagnosis. For years, I thought all children with TD were the same.

As time went on, I would hear of children with TD having differences from my son. Some would require a ventilator to breathe, and others would not. Yet others would have hydrocephalus or seizures. I soon would come to the conclusion that TD, like many other diagnoses, has its spectrum.

I continued to compare my son to other children with TD. I heard of one child in his late teens who claimed to have TD. This young man not only was able to communicate in complete sentences but in two languages as well. My son, not able to verbalize using words, is very different from this teen. Physically they look similar, however, I dismissed this child as not having TD because of his cognitive abilities.

As mothers called me from around the world to find out about survivors of this potentially lethal form of dwarfism, it never dawned on me to include this child in the mix as not only a survivor but a thriving survivor.

This changed when I received a phone call this week from a mother of a sweet girl with a form of TD which doctors said has significant differences from traditional TD: larger lungs, no developmental delays expected, not needing a ventilator and with her skeletal showing markers more of achondroplasia than TD. This child is different.

Halfway through the phone call, I remembered the young man I had dismissed as not having TD. Could it be? Could he have a variation of TD like this little girl? Is there a new hope for a different type of TD? I am no genetic scientist. I am only a mother putting two and two together. However, my perspective has changed.

Now when I hear from a mom who is pregnant with a child with TD, I can point to these two children as a possibility of not only survival but as a way to offer hope in what doctors often consider a hopeless situation. There is a new spectrum of hope. And hope is precious.

Does your child’s diagnosis have a spectrum? How do you encourage pregnant moms or new moms with your child’s diagnosis? Share your stories. I read each one.

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Please Stop Taking My Photo Just Because of My Dwarfism

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I remember the first time it happened. I was walking into my high school about eight years ago, and I heard a few kids across the lawn say, “Look, there’s a dwarf. Take a picture!”

This was when flip phones were the rage. They were a little less conspicuous than iPhones, but a bright flash made the photo official.

I remember walking away confused, wondering why they would want my picture. I wasn’t famous!

As the years progressed, cellphones became more popular, and society became obsessed with taking photos with them. We take photos of everything: our outfits, our shoes and even our food before we eat it! I am not shaming this behavior because if you have ever seen my Instagram, you know I do the exact same thing!

As this desire to capture every moment of the day via of our iPhone has increased, so has the instances of strangers taking photos of me in public.

When I’m in my sweats running to the grab a few things in the grocery store.

Snap.

Out on a date with my husband, Andrew.

Snap.

Pumping gas.

Snap.

All of these mundane things I do every day have become a spectacle that needs to be captured by strangers simply because I was born with a physical disability.

On my blog, Kate + Braun, I’ve written about a mom of who hushed her son after he saw me in Target. I’ve also written about a friend of mine who used the M-word to describe me. In both of those cases, there was an opportunity for me to use my voice and educate people.

But it’s different when complete strangers take my photo. I often try to approach them in order to tell them how it felt. Most people end up getting angry with me for accusing them of such a thing or walk away while completely ignoring me.

Honestly, it’s the most painful form of bullying I have encountered because it takes my voice away. The photo goes to who knows where, and I’m subject to ridicule and mockery without the ability to educate and inform people and lessen ignorance. 

I’m telling my story not for pity but to ask you on behalf of the people on my side of the camera: Would you be my voice?

Will you stand up when you see a friend or a stranger taking a photo of someone in public and tell them it’s not OK?

If you get a photo from a friend of a person with a disability, will you tell them to stop and not pass it on?

I have so much hope for the next generation and can’t wait to see how technology can empower, connect and encourage people with disabilities, but I need your help! Let’s use these tools to lift each other up instead of tear another down!

Follow this journey on Kate + Braun.

Lead photo source: Thinkstock Images

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To My Coworkers Who Made Fun of a Little Person

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I overheard you as he walked by – laughing to each other, trying to get others to join in your “fun.” This man, who has dwarfism, passes through on a regular basis and always has a smile on his face. People know him by name, calling out to him as soon as he rounds the corner. He seems to be happy, successful, and confident in who he is as an individual.

Your words and actions will probably never affect him, but they certainly affected me. You see, the moment you made fun of this man is the moment you revealed the safety of this environment: it isn’t safe.

You tear people down because of something they couldn’t choose about themselves. Instead of understanding the reality of differences in this world, you choose to turn them into weapons against anyone who doesn’t think, act, or look the same as you.

As someone who knows what it’s like to be different, your choices make me want to be guarded. Who’s to say you won’t poke fun at my differences when I’m not looking? Or worse, even when I am?

Your choices angered me. Who do you think you are? What makes your differences superior to others’?

Your choices stunned me. I didn’t attempt to extinguish the conversation only because of how long it took me to comprehend your ability to tear down a perfect stranger.

Your choices spurred something inside of me. There won’t be a next time, as long as I’m around to hear it. I won’t sit by and let your ignorance turn you into a monster. Instead, I will do my best to defend the differences of others – and myself – in hopes of opening your eyes to something bigger than yourself.

You aren’t bad people, you’ve simply learned to place a stigma where it shouldn’t be. I’m not saying this to put you down, but to make you think. Sometimes we as human beings don’t consider the repercussions of our actions and what they mean for the person on the other end.

Being obviously different than those around you – whether due to illness, disability, or simply genetics – is hard enough without the negativity of individuals like you. I hope it’s something you never have to experience, but learn to understand.

I wouldn’t trade my differences for anything in this world, and I bet this man wouldn’t either. For as much as my differences have taken from me, they have also given me more than I could have ever imagined.

So, the next time you see this man, or anyone “different,” think about the ways he’s most likely overcome adversity. Or appreciate the mystery of uniqueness. Whatever you do, don’t put them down because you feel entitled by societal guidelines. I believe we all need to become a little more considerate of the differences in this world. After all, they almost always make it a better place.

Sincerely,
Your “Different” Coworker

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Why I Post Photos of My Son With Thanatophoric Dysplasia

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Will my son mind I am posting pictures of him to social media?

This is the conundrum most parents are facing with sharing an adorable photo of their child’s momentous and not-so momentous moments.

Raising my firstborn, I snap a myriad of pictures of my miracle boy. Proud mom? You bet.

Most times, the comments I see aren’t, “My, how he has grown.” Because, as a child with dwarfism, growth happens very slowly. I notice slowly too. A shirt fits too tightly or
a onesie doesn’t snap closed. But, the pictures give hints of the transition.

son with dwarfism smiling

The pictures also chronicle the making of a miracle. When a mother is given a potential diagnosis of thanatophoric dysplasia meaning “death-bringing,” it’s devastating. The hopeful pregnancy becomes a distressing circumstance, to say the least.

Now, imagine this same mother searching the internet and finding a picture of a joyous, happy 10-year-old. Shock, unbelief and relief combine together as hope begins to fill her heart. I’d wished I’d seen such a picture when Samuel was born.

However, I did not. Instead, I was counselled not even to look on the internet.

I did finally look… I had too. I needed to know. I found many pictures of sonograms but no survivors. No images of sweet button noses, dimpled smiles or a video of a child’s
belly laugh. I had no way of knowing my son would grow to have a happy temperament which would light up my world and all who would come to know him.

son in motorcycle t shirt

How could I know? I had no evidence or proof to the contrary.

This is a major reason I post pictures of my son. To give this proof. To fill the heart of a
mother with hope. To show miracles happen.

mom with baby after birth

The question remains, would my son mind his proud mother displaying him in most of his glory all over social media? I read in another article about this topic where a mom asks her 8-year old and 10-year old for permission to post. I contemplate this strategy but quickly dismiss it. Why? Because my son is nonverbal. And, as much as my son loves his iPad filled with his favorite Elmo videos, he has no concept of Facebook or any other social media yet.

This is the challenge of developmental delay. Will he achieve this awareness? Time
will tell.

I have been in contact with many mothers who were given hope from a simple picture. And, as a mother who was given no hope, I know how valuable an image can be. A snapshot of my son laughing could give another child a chance at life.

son in carriage

When another mom receives news from the medical establishment like I had, they can now search the internet and see Samuel’s belly laugh on You Tube. Further research would reveal my son’s website or Facebook page. For these mothers to see a survivor, they can then advocate for their children and hopefully inspire doctors to believe as well.

I’d love to hear your thoughts. Post or not post, that is the question.

Follow this journey on A Miracle in a Living Room.

 

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To the Baseball Stadium That Hosted a 'Midget Wrestling' (Yes, Really) Event

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I write this letter to the Charleston RiverDogs event planning staff both frustrated and heavy-hearted regarding a special “event” that took place at your stadium on May 7, 2016.

On this night, your event staff hosted Micro or “Midget” Wrestling (as your pamphlet and radio ads worded it) as a part of your Saturday Night After-Show. My reason for addressing this with your staff is in no way to shame you or berate you, but to educate you on why hosting an event that exploits, objectifies and trivializes individuals with special needs for the entertainment of able-bodied people is both damaging to the reputation of your organization and to the disability community, particularly to those with dwarfism — a medical condition each of the wrestlers you hosted were born with. I hope my perspective will awaken you to how spectacles like this, as well as the use of the term “midget,” have a negative impact on the lives of people living with dwarfism and all who love them.

sign that advertises for midget wrestling

From the video of the event on your RiverDog Facebook page, I could tell that many of the men wrestling (or should I say “performing” for everyone’s amusement?) were born with a form of dwarfism known as achondroplasia. Achondroplasia is the most common form of dwarfism. It affects approximately 1 in 25,000 individuals and most people with this condition are born to parents that are of typical height/stature. It is a genetic disorder that occurs at random by altering the FGFR3 gene, which is one of many genes responsible for bone growth. For those with achondroplasia, this gene alteration causes their limbs to not grow as long as the typically developing person, as well as the skull to grow slightly larger than that of the typical person.

This medical condition is in no way a laughing matter, nor is it something that should stigmatize a human being for simply being born a certain way. Unfortunately, we live in a society that sees “different” as amusing when we should see it is beautiful. We live in a society that would rather run from, or in this case, laugh at what we don’t understand rather than seek to empathize with and truly know someone who appears to be “different” than us. The lives of people with dwarfism are affected daily by false media representation and misguided perceptions, which often mask the fact that dwarfism is a medical condition that, like any other, comes with both challenges and discomfort.

Many individuals with dwarfism (notice how I use proper person-first language when I phrase that), have endured countless operations to correct bowed legs, replace arthritic joints, lengthen limbs and more depending on the individual. Hilarious, right? On top of the physical discomfort and medical complications, individuals with dwarfism live in a world that is in no way designed for them. Simple daily tasks such as grocery shopping, pumping gas, climbing stairs and doing laundry can take a lot of effort and accommodation. Sounds like a lot for one individual to juggle, right? But there’s still more to mention. Even with all of those challenges, people born with dwarfism also face discrimination, social ostracization and ignorant mockery simply for being born with a skeleton that differs from that of a typical human being. Those with this condition are heavily marginalized, and somehow, it is still considered socially acceptable to view the condition as humorous, which has everything to do with a lack of education.

You may be wondering where my perspective of dwarfism stems from. I too was born with a form of dwarfism known as psuedoachondroplasia. Like achondroplasia, my condition is caused by a random gene alteration at conception. As a result, my arm and leg bones stopped growing at anearly age, the cartilage cushioning my hip and knee joints did not fully develop and my spine acquired severe scoliosis. I’ve endured dozens of surgeries including joint replacements and the straightening of my legs and spine.

Despite a childhood and young adulthood full of many physical and social challenges, acquiring dwarfism has proven to be a foundational contributor to the development of my compassionate heart and spirit. It has given me wisdom way beyond my years and insight into the human condition. Like so many others with dwarfism, I have led an accomplished and beautiful life. My condition has challenged me and empowered me to seek justice for those that are seen as “less,” whether it is because of their race, socio-economic status, ability, religion, gender or sexual orientation. I do not sell out because of my difference. Instead, I embrace my individuality, which then allows me to love and accept others exactly for who they are. I am an involved resident of Charleston, an educator, an artist/designer, a future mental health professional and an advocate. As an advocate of this marginalized group, it is my duty to address and shed light on instances like this that have a negative impact on my life and the lives of others with disabilities.

The negative implications of hosting a “midget wrestling” show at your stadium are as follows:

This event showed all of the young children watching it is OK to make fun of those who look different — in fact, it encouraged them to.

It taught everyone watching that dwarfism is a joke rather than a disability.

It advertised that the word “midget” is appropriate when describing a person with dwarfism. This word is highly derogatory towards those with dwarfism.

Finally, hiring this performance team encouraged this sort of spectacle to continue. I am fully aware this team was already traveling around the nation putting on similar shows. I plan on addressing them directly in another letter at another time. Even so, it was obvious from the team’s website that the company was exploiting people with dwarfism based on tag lines such as, “Book our midgets for your next event!” Seriously? Are you kidding me? How did at least one person on your staff see this and not have the slightest inkling it was wrong? Would it be funny if we threw another marginalized group into the arena based on their race or other identity? Wrestle with that. Pun intended.

You may have noticed this letter was written with a lot of emotion, and I have to tell you, it certainly was. When several of my colleagues brought this event of yours to my attention, my mind began to spin, and I felt my body consumed with shame, disgust and sadness. I thought to myself, “How is it 2016 and people with disabilities are still portrayed as circus freaks?” Just when I thought we were making headway as a society towards the acceptance of differences, your event reminded me just how far we have to go.

I am writing you all at Joe Riley Stadium to ask you to never hold an event like this in our city again. It is my genuine belief this event was meant to be nothing but amusing and lighthearted, but I can promise you it has already had its negative ripple effects. Even on social media, I witnessed members of the community commenting on the event video with “haha!” and tagging their friends who would also find the video hilarious. This city is home to several individuals with dwarfism, and I can guarantee you, someone in that audience loves someone with dwarfism and was left utterly downtrodden by what they witnessed. I have attended many of your games and would have been downright humiliated if I were in attendance that night.

Once again, it is not my intent to berate you or even taint the RiverDog name. You all are a wonderful organization that has brought this city so much joy. I realize this is a widely misunderstood scenario, and I firmly believe we don’t know what we don’t know. I hope my perspective will cause you to consider everyone you serve, and understand the consequences of your decisions. It is possible to hold entertaining events that do not hold this sort of weight for certain groups of people, and I encourage you all to continue serving our community through fun that is inclusive to all.

Thank you very much for your time and consideration.

With heart,

Brianna Beck

The Mighty is asking the following: Describe a moment where you experienced intolerance or inaccessibility. What needs to happen to change this? Check out our Submit a Story page for more about our submission guidelines.

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To the Mother at Target Whose Child Was Curious About My Dwarfism

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I saw you run into Target this morning as I was heading in behind you. You looked busy! I could tell your mind was racing through your list, making sure you grabbed everything before you rushed off to the next errand with your cute child in tow.

Kate Braun

You might not remember me, but we both were in the dairy aisle and your child saw me. He was curious and asked you, “Mom, why is that lady so small?”

You didn’t hear him, so he asked louder, “Mom, why is that lady so small?”

You didn’t hear him again, so he shouted, “Mom, why is that lady so small?”

I looked over, and you were so mortified. My heart broke. You hushed your son, grabbed the milk and pulled him out of the aisle. You left so quickly I didn’t have the chance to let you know it’s OK. I wanted to tell you I run into this situation all the time, mostly out shopping.

Kids are innately curious. They’re trying to figure the world around them, and they want to know why things are the way they are. Your child is not the first, and I’m not embarrassed by your child asking.

This situation has happened more times than I can count, and I’m always amazed that kids ask the same questions each time.

Why is that lady so small?

Is she a mommy?

Why does that mommy have a big head?

Can that mommy drive?

I know you’re busy and don’t always have the time to explain everything to your child right when they ask you. You probably didn’t think this trip to the store was going to involve a teaching moment about explaining differences. You were just hoping to remember everything on your list. I get it. However, if you don’t mind on your drive home or before bed tonight, can you explain my difference to your child? Children need to learn that being different is OK.

They’re going to run into so many people in their life who are different from them, and through my experience (although I’m not a mother), answering kids questions when they occur and modeling behavior is key. Children look to you as a model to understand differences and how to act in those situations. Differences shouldn’t be ignored but celebrated because we’re all a little different from each other in some way or another.

Now I can’t speak for everyone who has dwarfism, but though my experience when I have had the opportunity to explain differences to kids, I have found a few similarities in their curiosity:

• Kids aren’t as interested in labels or terms as much as questions about what I can and can’t do. They don’t care as much about the fact I have dwarfism or achondroplasia as much as they care about if I drive, how I live in a house by myself or if I’m a mommy.

• It’s important to reinforce the disability or difference they see is only one characteristic of the person. I have likes, dislikes and live life just like any other adult.

• It’s important to explain people with disabilities can do many of the same things, but it might take them longer, and they might do them in a different way or use assistance.

• In my opinion, I love it when parents encourage kids to ask me questions. Not every person may be comfortable having a child ask them questions, but I love it. I’ve had many parents come up to me and say, “Excuse me, my child has some questions for you about your disability, do you have time?” I think it’s polite and always gives me the opportunity to decline if I don’t have the time.

• Finally, kids don’t always understand that staring is rude, it’s just a way they work out their curiosity. Teach them that it’s OK to ask questions but guide them in how to ask.

Sincerely,

Kate

Follow this journey on kateandbraun.com.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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